At the Intersection of Gender and Autism – Part 2

There was joy in that realization and also sadness. My diagnosis came too late to help me in my role as a mother when my daughter was young, a role that I often struggled with. Many aspects of being autistic can make the child-rearing years of motherhood challenging.

Babies have round-the-clock needs. They’re stressful, messy, unpredictable and demanding. Basically they are everything that an autistic person finds hard to cope with. Gone was my precious alone time. Gone were my carefully crafted routines. Even my body was no longer my own, transformed first by pregnancy then by postpartum hormones and breastfeeding.

I was completely unprepared for how hard motherhood would be. Unaware that I was autistic, I often felt like a bad mom. What kind of mother breaks down sobbing uncontrollably and bangs her head against the dining room wall? Certainly none that I was aware of at the time.

Perhaps knowing why I was having so many meltdowns–or even having a proper word for the those scary sobbing, headbanging episodes–would have made the early days of motherhood easier. Perhaps knowing that I have a social communication impairment would have pushed me to understand why it’s important for a mother to frequently say “I love you” to her child.

When I told my daughter Jess about my early suspicions that I might be an aspie, initially she found it hard to believe. As we talked more, she slowly came around, at first agreeing with the traits I put forward, then beginning to offer up other aspects of me that fit the female ASD profile I’d shared with her.

Since then, we’ve talked about what my ASD means, how it’s impacted her as my daughter, and how it influences our interactions. We’ve also agreed that it isn’t all bad. Far from it.

I wasn’t a traditional mom, but I think I managed to not mess up the important stuff. We had rules and routines, though sometimes too many. We played together and read together and watched The Sound of Music every time it ran on TV. We raised a dog and loved her and cried together when she died. I taught her to cook and to drive and told her it was okay to do her Algebra homework in a way that made sense to her, no matter what her teacher told her.

But when it came to girl stuff, I was mostly clueless. Sure it was easy at first: dresses and pigtails, dolls and tea parties. Toy stores make it obvious which toys are the “girl” toys. As she got older, I tried to interest her in the things I’d enjoyed as a kid but Jess had little interest in Legos, was easily bored by the detailed instructions I so loved following. She liked baking and playing video games. She liked to paint and do craft projects, creating art from anything she could get her hands on.

Words and watercolors and scraps of yarn kept her busy for hours while I looked on in puzzlement. I don’t have an artistic bone in my body and a blank canvas sends a shiver of fear down my spine. It was fascinating to watch as my daughter grew into a young woman who was both very much like me and a completely independent person.

She picked out her own clothes, chose her own hairstyles, took up the guitar and developed a love of poetry. I don’t know where she learned about makeup and nail polish and which shoes go with what skirt or how to match jewelry to an outfit. It wasn’t from me. In fact, I’m the one who asks her for fashion advice. She’s remarkably good at it and remarkably girly and that makes me smile.

Still, I look at her and see so much of myself. She has my passion for what she believes in. She has my directness and honesty, my attachment to the truth. She definitely has my sense of humor, one that few others get. She has my practicality and frugalness, my drive for perfection and my tenacity. She has my independent spirit, secure in who she is in ways that I wasn’t at her age.

Never once has she hinted that I wasn’t a good mother. She sees the best in me and always has.

I’m not sure who or what is responsible for that, but I’d like to think her dad and I are, at least partially. I’d like to think that even without the benefit of a diagnosis, I managed to do that most important of things–raising a child–well enough.

*

Increasingly I’m making my peace with not seeing myself in traditional role models. I’ve always known that I wasn’t a typical female. My presentation is atypical–from the way I dress to my crew cut–but so are my interests.

Again and again I’ve found myself in male-dominated environments. The Economics department where I did my undergraduate degree. The martial arts schools where I earned a black belt and later taught. The shooting range where I learned the finer points of target shooting.

Autism is often framed as a male condition. The original diagnostic criteria were primarily based on studies of boys. The diagnostic rate is many times higher for males than for females. There is even a theory suggesting that autistic women are “more male” based on thinking styles. The psychologist who diagnosed me, noting my presentation and interests, suggested I look into the extreme male brain theory to see if it was a good fit.

Does ASD predispose women toward typically masculine traits? Would I find economics or sparring or target shooting as interesting if I wasn’t autistic? What about shopping or fashion? Does being autistic prevent me from liking typically feminine interests?

Those questions are impossible to answer.

However, I can look around at the other autistic women I know for clues. Some of them are interested in traditionally male pursuits like martial arts and fencing and gaming. Some are interested in more traditionally female pastimes like baking and knitting. Some are scientists and mathematicians, historically male-dominated roles. Others are teachers or social workers, traditionally nurturing professions. Few have a love of fashion or shopping, but some enjoy it quite a lot.

Ultimately, we are individuals, influenced by being autistic, influenced by being female, but in the end still individuals.

*

Perhaps rather than extreme male brains, autistic women have extreme individual brains. As a group we seem to be less influenced than typical women by the roles society expects us to play.

As a child, I had little concept of gender roles. I liked what I liked, regardless of how socially appropriate my interests were. I played with Barbies and Legos, Lincoln Logs and Tinker Toys, Little People, Weebles, Spirograph, Fashion Plates, Hot Wheels, and board games. My Barbies rode around in the mobile home, past my model train set and my slot car race track. No one told me there were boys’ toys and girls’ toys.

In fifth grade, a friend asked what I wanted for my birthday. When I said Legos, she said I needed to grow up because soon I would be “changing” and wouldn’t like “things like that” anymore. I felt like she knew something I didn’t. That scared me but I was undeterred.

I liked Legos. I also liked M*A*S*H and collecting coins and shooting hoops. I liked sewing and making pottery. I had a punching bag hanging from a chain in the basement and a well-worn baseball mitt. I liked romance novels and horror novels, Nancy Drew and logic puzzles. I hung photos of rock stars in my high school locker the went home and pretended I was an outlaw as I shot cans off a stump in the backyard with my BB gun.

My interests were both typical and atypical for a girl my age. Sometimes this bothered me, like when my friend ominously (and incorrectly) predicted I’d lose interest in Legos. Most of the time, though, I did what I liked regardless of what others thought. At some point, I guess I just resigned myself to being seen as the geeky girl.

Like many autistic kids, I also missed a lot of the social byplay that happened among my peers. If I was supposed to be modeling myself primarily on my female friends, I never got that message. I modeled myself on people that I liked and admired. Sometimes those people were female and sometimes they were male.

I picked up interests based on how interesting they were, regardless of whether they were socially acceptable for girls or even for kids. At nine, I was the only child in a sewing class for adults. Apparently there were no sewing classes for children so my parents found an adult class that would have me. Off I went each week, with my sewing kit and a wooden block that raised my sewing machine pedal a foot off the ground so my foot could reach it.

It never occurred to me that this was unusual. My extreme individual brain likes what it likes. It always has.

114 thoughts on “At the Intersection of Gender and Autism – Part 2”

I loved reading about how you raised your daughter, and about what a wonderful adult she has become. I would think that you did a fabulous job in many areas that other parents never saw. I homeschooled my three children, and we followed a similar pattern. The result was that they are more independent and have a better understanding than the majority of their peers.

I read recently that the children we have are not there to make us better people but that the parents are there to make the children better people. All our flaws and faults, strengths and skills are designed to produce the best result for the child who is born out of that. It’s like our bodies have a genetic teacher’s manual. I certainly would not have wanted to have been born in any other family. My parents were loving and understanding of me. My mother has very strong Autistic traits herself and guided me through some of those very hard moments that I just couldn’t understand, like fair-weather-friends at school. My dad is the most social person I have ever known and let me watch all of his encounters at the store and with work acquaintances off work hours. He comforted me and protected me from as much maliciousness as he could, yanking me out of programs if he heard other parents calling us names behind our back. He also taught me shortcut math and gave me a love for puzzles and games. I remember being puzzled by a neighbor friend and why she wanted to be in her family. I found most parents very intolerant of the way I was. They were impatient with me and didn’t understand a lot of my needs or my anxieties. Your daughter is probably in much the same position as not wanting to be born to any other family. You probably gave her experiences that her friends could never have because their parents had no interest or no idea to introduce it to their children. Your daughter also has gifts that make up for what you do not have and you have an appreciation for those gifts that other families would not see.

I like Temple Grandin’s thoughts on how we think. If I go by her model I’m a pattern thinker and all of my interests revolve around stuff that has a pattern. I love knitting, sewing, cleaning the house, and baking. Cooking is not fun and neither is gardening (but I will find that relaxing in cleaning it up). Cooking and gardening are too flexible in their results. I like baking because it is essentially chemistry. If you follow the instructions you will get the same results every single time. With cleaning, I follow a pattern to get the whole place cleaned up and it is so satisfying in the end. Knitting is all memorizing a pattern. I also did martial arts which was a lot of pattern memorization.

If I use any other method of classification like Meyers-Briggs I just don’t understand how I fit in.

I love the idea of a genetic teacher’s manual. And like you described your parents having balanced parenting/personality strengths, I think my daughter is mostly definitely a mixed product of both her dad and me. Hopefully she got most of the good parts. 🙂

Parenting two children, one Autistic and very much a girly-girl who loves to run and bounce and be physical while wearing pretty dresses AND tights (!) and one non autistic. who is incredibly sensitive, artistic, loves soft clothing and soft, silky sheets and is not into sports like so many of his friends.
I’ve had many of the same thoughts and feelings as you describe while parenting both of them – Am I doing this “right”? “Others seem to instinctively know how to do this better than I seem to.”
You know that whole thing about “it takes a village”? My ideal “village” would be filled with people like you (I’m being literal and specific), my friend Ibby, my friend Nick and his wife and daughter, many Autistics who do not speak, as well as others who are non Autistic (but kind and who are able to celebrate and appreciate a neurology that isn’t like theirs), because honestly I would love guidance about all of this for BOTH my children, but even more, I would like to not feel so alone, because I do feel very alone so much of the time…

Parenting is so bewildering at times. From the small amounts of your parenting that you’ve shared (because I know there is much you don’t share for your own and your children’s privacy) I think you’re doing a terrific job. The way you are so open with Emma about your vulnerabilities and the challenges of parenting feels important and real and like the best possible way of going about it. Both of your children are lucky to have such a thoughtful fearless mom.

And I guess in a way, you (and I and other parents who are open to it) have a kind of virtual village we can draw on for support, if not for the kind of daily in-person interaction that happens in an actual village/family/tribe/etc.

– If I was supposed to be modeling myself primarily on my female friends, I never got that message. I modeled myself on people that I liked and admired. –
So much this.
Apart from the fact that my peers had as little figured out as I did and I found it natural to rather model myself after adults I liked, no matter the gender, for that exact reason, what they had figured out seemed to make so little sense many times that I also tended to get inspiration elsewhere, sometimes for the better, sometimes for the worse.

The Erich-Kästner-books are not a bad thing to model your moral compass after, other things I chose are …

I think I gravitated toward peers who I felt had figured out things or at least different things from what I already understood. For that reason, I was always tagging along after older/wiser-seeming girls, sometimes in a good way and sometimes in a really counterproductive way. 🙂

I have spoken to one of my children about growing up with an aspie mom. I was afraid that I was too aloof or intimidating, the bad mom as you put it, something I’ve always labelled myself with. She told me that she always thought I was so ‘together’, able to handle anything and everything that came up and unconventional in the way I interacted with her that she thought was cool. People tell me all the time how interesting, smart and funny my kids are and what great friends they make. I’m just learning how to take credit for those qualities rather than continue to beat myself up for not being a ‘typical’ mom.

I’m just learning how to take credit for those qualities rather than continue to beat myself up for not being a ‘typical’ mom.

This is so fantastic to read. I think we each bring different things to parenting and being unconventional can work as well as being a more traditional mom or dad. My daughter says that people often ask her what her parents did that she turned out so well (usually in the context of trying to figure out how to parent their own children, I guess) and she said it’s a hard question to answer because it seems like a lot of parenting was more by osmosis than by explicit rules. 🙂

That’s wonderful to hear! I often worry that I am too distant, withdraw too much (when overloaded, which is often), etc. But I see that my kids are independent and yet still want to be with me a lot – so I must be doing something right? – I will ask them someday. 🙂

Stealing your first paragraph of part two but changing very little: ‘My diagnosis came too late to help me in my role as a father when my three daughters were young, a role that I often struggled with. Many aspects of being autistic can make the child-rearing years of fatherhood challenging.’

Being aware what was expected of an involved father and struggling with this role made me feel guilty very soon. No, it was no problem changing diapers, bathing or giving them the bottle. A little later, however, when it became time playing child games … I was incapable of switching into any role-play or faking interest in talking like a pink plastic pony for more than minutes. When the kids were in their early teen years in one way it became better. A math teacher and taxi driver was in demand.

At about the same time the job-related stress level alias ‘career’ had started to drain so much energy for coping out of house that it became impossible to hide my need for being alone in house anymore. E.g. literally spending hours in the basement re-polishing spotless shelves or organizing tools in the workshop. Or worse, staying up alone long after midnight reveling in virtual solitude and in consequence getting up much later than anybody else. The ensuing criticism from my wife was understandable but didn’t improve the situation. We just did not know what was going on. Understanding or accommodation, for what? I just was a lousy father and husband. And loathed myself a lot, for more than twenty years. Sparing you the story of escalation into deep depression, bla, bla …

Today my daughters are in their late twenties, early thirties and we are spending – what is it called nowadays? – quality time with each other. Quite a lot. All three agree that I was a reasonable father (they call it ‘good’, maybe they are overfriendly; Aspie self doubt): honest, reliable, setting an example in, … full stop. As teenagers they noticed with what I struggled and appreciated what I tried to give. We never talked about it then, we had no name for it: ASD.

And still: As an Aspie mother it must be far more difficult. it is almost impossible to escape the expectations of everybody around whereas lousy fathers are somewhat tolerated in our society. Still. So I better stop the whining complaint. Relatively speaking, I was better off, I guess 🙂

It’s so great to hear from parents of adult children who struggled with the parenting process but still have (or have created) good relationships with their children. I think that adult children often end up having a practical/realistic perspective on their parents and can forgive or understand quite a bit when given the opportunity, which is a relief.

Wow, Ernest, you gave me a lightbulb moment about my own mom in describing your late nights of solitude. My mother used to stay up very late watching TV alone and sleep very late in the morning. My dad criticized her a lot for that and unfortunately I think that we kids picked up the idea that she did it because she was selfish somehow. But I can imagine now how much she must have needed that time just to function the rest of the day.

Infancy was a breeze for me. The only time I had trouble was if he started crying when I was already overwhelmed from having to keep the house spotless, do supper every night, get good grades in college, manage all the finances and household shopping, and pretty much do everything but earn the money. Toddlers, however, are an absolute nightmare. All the noise, poking, prodding, toys everywhere… I’m pushed almost to my limits nearly every night. I’m looking forward to when he gets a little older.

I wouldn’t worry about target practicing if you live in a rural area. In my territory, the more country a girl is, the more likely she’s a good marksman and enjoys shooting, and also the more likely she’s good with cars, fixing them, sewing or doing some kind of needle or yarn work, and being generally useful in ways extreme girly-girls seem to be against doing themselves. Heck, I’m considered the weirdo in my bunch since I went nearly twenty years without shooting a gun, and that I’m not good at sewing or knitting. (But I crochet!) Another line I’m having to draw for myself is between “country” and “autism”.

I really enjoyed when my daughter started to become a “person” – one who talked and had interests and opinions, etc. The toddler years were fun for us too, but perhaps because she was fairly independent and self-entertaining. But hang in there – by the time they hit school age, some breathing space opens up and motherhood is a little less “in your face” 24/7.

Fantastic post, I also tend to blur gender lines with my hobbies. The line about your heroes being female or male and not just emulating other women particularly reminded me of my childhood. I fully expect never to have children but I sometimes wonder if I could cope with it if I did, considering the effects of the autism.

Thank you so much for writing this blog and these posts. I am really struggling with being an aspie Mum and your bit about sobbing and banging your head on the floor touches a very raw nerve for me. I am so ashamed of my daughter seeing me like that, on a fairly regular basis. It makes me feel like such a bad mother and makes me sad for her. She is an only child and I feel bad about that too, she has nobody else to go through it with. I’d love to be NT and have other kids, but I couldn’t cope with it. Having a hard time accepting the aspie I am so far … two and a half years since diagnosis, now aged 38.

Don’t be too hard on yourself. You’re doing the best you can and that’s all you can ask of yourself. Do you have support or someone who can help out with some respite time for you? Are there some rescue activities that you can plan to do with your daughter when you feel yourself getting overloaded? I’m not sure how old your daughter is, but if you want to share some more, I might be able to find you some more information/resources that could help.

… once again – so very similar!
I don’t think there is a reply of mine on this site where I have’nt mentioned some regrets – when I discovered autism, specifically Asperger’s within the last several months, a whole flood of realizations swept over me like a tremendous flood of water – as a person who thinks entirely in pictures – that is an extremely vivid description.
It was very emotional at the outset – I even apologized again to my daughters for being such an untouchable mom – both physically & emotionally.

I think I like to use the word ‘androgynous’ to describe my thinking all my life.
I am an artist – I notice things about people that others don’t ‘see’ or ‘get’ –
patterns, textures, colour, shapes, mannerisms – interesting how I can be staring at some interesting line in a persons face, and never realize they are uncomfortable or angry or whatever – I can think of so many times when my daughter or a friend said – why are you staring at that man/woman/child/old lady/man –
I might reply – Did you see her eyebrows – they were so interesting …
My friend might say – uh-YEH, I saw her getting ticked-off wondering what on earth is wrong with you!
lol
Don’t get me started on learning to ask if I can touch an extremely interesting textured material or hair, and how embarrasing this apparently is to your friends. No wonder I prefer to be alone. I can just explore the world at my leisure without reprimand.
I am almost always extremely misunderstood by, & can not tolerate
women. This is because the vast majority of women think with emotion. I have many times been told I ‘think like a man’ – hence my business slogan became: Look Like a Girl•Act Like a Lady• Think Like a Man• Work Like a Dog
The former two are things I must constantly remind myself to do because of the inate nature of the latter two.
I think very logically, & thus, I have an experience-learned pattern of realizing the difference between men & women – though I often have to remind myself of it because I still come at everyone the same way until that person (man ir woman) displays tendencies to avoid the facts or pertinent info – then I am forced to piece their comments together like a puzzle – choosing the peices that are relevant to the job & discarding the uneeded drivel.

Once I begin any task it is nearly impossible to stop. I’ve discovered I am quite put-out with age because experience & weariness thwart a lot of my work marathons.
As a kid I liked all things mechanical – I loved taking broken things apart and often actually repairing them, or at least discovering how a thing worked and why it was not cost-efficient to repair.
When I left home at 16 I fell in love with construction & power tools, which I use to this day in my sign shop.
With the ability to think in images, I can easily engineer any design, and have even custom-made or designed custom components for sign jobs.

SO – of course I could elaborate on these things – but here is an interesting thought based on an artical I read about Neuro-typical thinking people, which is the vast majority of people
One of their traits is ambiguity. They are often vague in communication. Yet, these are the people gifted to somehow be able to ‘read’ & interpret facial expression, & emotionally sensitive.
Go figure.
Here are we with Asperger’s – off-the-chart intellects, skills, creativity, and we have no clue to read other human beings.
This concept alone is similar to colour-texture-shape-mannerism that I can’t stop staring at …

I know exactly what you mean about age crimping your style. One of the most frustrating aspects of growing older has been a reduced endurance for work/pursuing things I enjoy.

I hope that you relationship with your children has been improved/made more understandable since your diagnosis. It seems like having that explanation not only gives us our own new sense of perspective, but it can help family members better understand some of those things that are painful or complex (like being a distant or cold-seeming parent).

I grew up making artistic projects out of almost anything I could get my hands on, just like your daughter:-) Stories, drawings, things, “machines” (not really), songs etc… That and thinking out ideas for creations and play, and imagining things was a constant major flow of activity either in my mind, or implementing ideas… That is why I thought I could no have Asperger’s when I first came across it and realised there was something relevant about it. I had heard that “impairment of imagination” was one of the defining characteristics and that certainly does not apply to me, very much on the contrary.

Generally, just like you describe for yourself, I didn’t have much of a gender concept although I could see that many girls were very girly (compared to myself). I loved playing with cars for the fun of “driving” them through features in the surroundings that resembled car lanes, and I loved lego and other building toys, and toy swords, but I also played with teddy bears and dolls and plastic horses. I had big collections / “populations” in different periods of time (plastic horses, paper horses, smurfs etc) and some of my most typical play was elaborate setup activity of a planned play scenario for e.g. the horse collection including imaginary buildings, landscapes, paths etc. The actual playing in the scenario that was the official purpose of doing it, typically didn’t last long and tended to fall flat… it wasn’t as I had imagined. So the play was mostly disappointing or very brief, the enjoyment was in the preparation…

Re. gender, it is also a different time though. As discussed earlier, young kids seem very gendered today. I don’t remember it being like that when I grew up. My dad “gendered” me eg. told me that certain toys are for girls (unsettling comment because the things & activities he said were for girls were not interesting!). I also heard occassional comments from other family members in that direction but didn’t really take them seriously. Andthere were good “non-gender-specific” toys to play with, for example Lego was not particularly a boy’s toy, it was(/is?) marketed as for all kids (at least in Denmark where I grew up). Virtually all kids I knew of played with it, at least I saw many kids I knew have or play with it, and assumed all did, girls and boys alike.

The actual playing in the scenario that was the official purpose of doing it, typically didn’t last long and tended to fall flat

Yes! I had little interest in the typical play scenarios and spent hours “setting up” my toys for 10 minutes of “playing” with them. Even Legos took on this characteristic. I’d spend most of my time building the prescribed item based on the directions and then have no interest in playing with the little figures in whatever scenario was intended by the designers. It seemed like a much better idea to take it all apart and build it again. 🙂

I think Legos were not so much gendered for younger children but were seen as something that girls didn’t play with once they approached early teens. At that point, it was considered weird for a girl to continue to have interest in what were seen as boy/childhood toys. Whereas I think a 14-year-old boy “still” playing with Legos would have been seen as less odd. These days, of course, Legos are something that even adults buy/enjoy so it seems like that’s changed.

I think Legos were not so much gendered for younger children but were seen as something that girls didn’t play with once they approached early teens. At that point, it was considered weird for a girl to continue to have interest in what were seen as boy/childhood toys. Whereas I think a 14-year-old boy “still” playing with Legos would have been seen as less odd.

That is right… I played with lego as a young child (as more or less all children, nothing atypical there) but no longer when I was a teenager. I can’t think of anyone else who did either, neither boys or girls. Where I was, I think it would have been seen as odd also if a boy played with lego in an older age, as it was considered a toy for toddlers and young kids.

I still played with my elaborate horses set-ups around that age though:-) but I was embarrassed about it and hid it. We lived in my grandparents’ apartment for about half a year when I was about 11 or 12, so that was preteens just after my parents’ divorce. It was a very stressful time, because there was little privacy and my play set-up (my big box with my plastic horses, and a bag with paper horses) was an important way for me to mentally be in a familiar imaginary environment where I could relax and recharge, take a break from the “real” social world. I was very stressed due to the lack of privacy, much talk, new school start, recent divorce and move etc, so I needed to use that “vent” often (or similar) – to go into an imaginary, ordered world of my own, in solitude, and let the rest of the world cease to exist for a while. However, that type of play was increasingly considered childish / not age appropriate, and I was painfully aware of that. I was hyper-vigilant to any sound that indicated that someone would come and open the door to the room where I was playing, in which case I’d quickly pack it all away and come with some lame excuse for what I was doing, like ordering my things or something. One of the thing I remember of the new flat we moved into and the great relief it was, was playing with my set-up on the floor of my new, empty room. There was no furniture in the apartment yet and it took some time until we moved in officially, but I just enjoyed so much being there alone, with no one around to judge at what kind of play was appropriate for a girl my age.

(that isn’t about gender though – the horse theme was very gender appropriate for a girl, just the type of play wasn’t age appropriate)

After reading your comment and a couple of others about how we felt compelled to hide certain passtimes we enjoyed (or still enjoy) due to their age inappropriateness, I’m wanting to write a post about it. It’s sad and frustrating that we’ve had shame attached to certain things.

I wonder what it is about being autistic that puts in this situation (because it seems to be a common theme)? Perhaps not being as tuned in to social pressures? Or our tendency to fall in love with something and not be ready to give it up until we’re really good and ready. I’ve noticed that my special interests only fade away on their own schedule and they’re nearly impossible to drop prematurely. Special interests also don’t seem to “respect” the age appropriateness considerations that most people subscribe to.

Also perhaps the degree of attachment to certain familiar passtimes, bordering addiction, to repeat an activity often and in solitude, in combination with flowing over the “age appropriateness” cultural boundaries provoke some adult caregivers. I think that’s what provoked my grandparents – my fondness of my own company/solitaire play (perhaps it was also inconveinient to them – that they couldn’t keep an eye on all the kids at once) and the repetitiveness, like a ritualistic set-up. I think it may have subtly signalled “weird development in progress – Must be Stopped Before Too Late” to them and some other family members, “social” was generally encouraged and “alone” was not (not sure if they thought consciously about that, but it affected their behaviours towards me and the signals they sent/words they said etc to the effect that I felt embarrassed about activities that were for me normal, necessary, favourite play activities).

This made me smile because it conjured up the Star Trek “computer” voice calming stating the warning to whoever might be in earshot.

On a more serious note, it’s the idea that parents can somehow head off this weird developmental process or get a kid “on the right track” or “caught up” that I think causes all sorts of problems for kids who are diagnosed early. Recognizing that our trains run on entirely different, yet parallel tracks feels really important, yet most “cure” based stuff is presented as “same track, but running too slow” or “same track, but train is broken”.

Yes, there are probably both positive and negative sides of “flying under the radar” as a kid…

With “Different, not delayed”: I agree in regard to “age appropriate play”. Actually I think “age appropriate play” – VS the kinds of play we’ve talked about here – shouldn’t be something to haunt any kids with, autistic or not, to say that there is something wrong with them if their interests don’t fit into a typical average milestone category.

That said, I don’t agree with the idea that there is no delay, only difference, if we talk about more general abilities such as social understanding, social skills and organisation.

Everybody are on different tracks, but certain basic skills and techniques are necessary for being able to cope with life – social and organisation abilities being some of the essential “glue” where deficiencies undermine development in all sorts of other areas and situations.

I have been largely raised under an “assume competency” model … as a kid I was mostly left to do what I wanted at home with little interference. I got really good at some of my favourite activities which I did constantly, but did not progress much in the areas where I was weak at the outset (especially social grasp and organisation) because I naturally gravitated away from practising things I found stressful and frustrating. For example, it was much easier to ignore & forget people than try to understand and please them; or even try to understand that it mattered. I also progressed very little with some of my favourite activities, such as drawing, because I just kept drawing the same motives in same perspective – same angle et.c over and over. I wasn’t challenged to develop my techniques because I was happy with just going through the moves (“if it ain’t broken, don’t fix it?”;-) and there was no significant pressure or guidance to do otherwise.

I think “the golden middle way” might be the best approach for most kids: respect for differences yet also focus on real delays and direct intervention/instruction/training to help & pressure a kid to catch up on e.g. organisation skills and understanding of the social environment. Time & respect for favourite activities & strengths, yet also gentle pressure to push for progress in “least favourite” skills essential for coping, functioning, living independently, planning and accomplishing goals et.c.

I spent most of the afternoon working on a post about this and now I feel like I’ve already replied to your comment because I paraphrased you in the post. 🙂 In sum, I totally agree with you. What Ariane spoke about in her original post in this (which has been at the back of my mind for weeks) was how she assumed that her daughter’s speech was delayed and so didn’t seek out any other means of helping her communicate. I think that’s a very specific kind of situation where thinking only in terms of delay can be a problem because then a parent focuses only on getting the childs “speech train” to catch up with the other kid’s speech trains, rather than looking that the possibility that their child is in fact riding a “text-based communication train” that is running parallel to the other kids’ speech trains.

I tried to expand on that in the post and included that you mentioned about the golden middle way along with some thoughts on where the differences might lie between a true delay that can be caught up and a difference that needs to be accommodated/encouraged/supported in a way that is on a parallel or other track. So thank you for the food for thought. It helped me anticipate the “other side” of the issue and try to clarify things with some examples.

It also occurred to me just now that autistic kids might benefit as much from being given lots of explicit information (about how things like the social world work) as they would from being given instruction (i.e. here’s how to interact socially in X situation). I’m not sure if that necessarily makes sense, but it’s got me thinking in an interesting direction.

Yes it makes sense and I also think it would work better.
‘
When I think about it, I responded poorly to instructions in areas I wasn’t interested in – like “do this” or that for no reason that seemed important to me. They seemed irrelevant and unrealistic, time wasters (my time being typically fully booked with my own ideas). However, I was very interested in learning about the world and hungry for systematic information, e.g. intensely attentive in school when something interesting was explained, so good systematic explanations would have planted seeds of understanding and quite likely also made the social world more interesting.

Competent explanations requires a competent mentor / parent of course, but then so do instructions (and anything else).

Side-thought: a lot of material that aims to help autistic/aspie kids with developing skills seems to assume that the parents and other caregivers are by default socially competent, perfectly capable of reading social situations, naturally “in the know” about social rules (of which there are, apparently, only one version), emotionally stable, well organised. In my case, that assumption is wrong in regards to my parents’ social abilities. Given that autism seems to run in families (diagnosed, undiagnosed and broad phenotype) I wonder in how many cases parents and family of autistic children are not able to provide a clear, instructive model for social relationships, interpretation of non-verbal communication, group politics, life organisation etc because they are sublty confused / struggling with similar issues themselves and perhaps don’t even know it, while they are by professional advisors assumed to do so. Then the concept of “delay” is pointless and confusing… delay relative to whom?

That’s a great point about social skills and other training being entrusted to (potentially undiagnosed/unaware) autistic parents who don’t have the same instincts that nonautistic parents might have. In my case, I think I passed on some autistic social traits to my nonautistic daughter, basically undoing some of her own potential natural tendencies.

And now I’m thinking about another post on the topic of instruction/information and how instruction is best received by many of us when it’s accompanied by relevant and cogent information.

Being told why to do something should be just as important as being told what to do. For me, anyway, knowing the logic behind something is the key to learning it – whether it’s how to behave, Latin grammar or why my radiator stopped working. (And I love learning!) Besides, if you explain the why then people can work out how to behave in similar situations because they can apply the logic. If you just say that you act in a particular way in a specific situation then all you’ll get is specific behaviour in a specific situation, not in a similar but nonetheless different one.

I was just infodumping at having this exact conversation with someone yesterday! I do much better with changing something I’m doing when I know why I’m being asked to do it differently. There is definitely a post coming about this too. 🙂

I love so much that you write, but especially this series, and this post. A testament to so much more than just the autistic experience, but mothering, being a good enough parent, your own parents who allowed you to be the remarkable individual you were as a child and have become as an adult, and just being human. I love that you can see your daughter as an individual and see how she is totally different from you and yet find the characteristics that she has in common with you. Maybe the undiagnosed autism, or just who you are, freed you both from the stereotypes to find authenticity, and that cannot be valued highly enough. Thank you for giving us a window into your world and your family.

I agree, another great post. I played with most anything I felt like growing up. The oldest of six, my sister and I (who did not come along till much later) were outnumbered by the boys. While I did have a dollhouse and dolls (paper and plastic) I was equally happy playing with my brother’s Matchbox cars and the Hot-wheels tracks. I’d set them up as close to vertical as I could while still making sure there was enough of a horizontal surface that they would not fall off as they speed down, and I would let them rip. The best part was the loop da loop. I also loved blocks. The kind with arches in them, square, rectangle,round etc., and I’d build bridges, towers and the like. I’d also take other people’s cast offs, old bottles and bit of jewelry and make things with them. I loved MASH, though I was an adult as it was finishing it’s run. I could climb trees and hang out on garage roof, or walk a train track. I can also wear a pair of heels and make-up, but my preference is comfy jeans and a pair of nice boots and a button down or pull-over top. I’m just not into what is for me high maintenance make-up and clothing. My hubby likes heels and skirts and all of that stuff and unfortunately for him it’s just not me. I think we all find our own way and what feels good for us. Likewise I’ve done my best to support our kids in being who they want to be. Our oldest daughter is a lot like me in the dressing and comfy department, our son likewise tends towards comfort, jeans etc.. Our youngest is the one that loves to wear the heels and skirts and make-up and she does it well, and she can wear sweats and be grunge as well. Each is secure in themselves and lives that way. Over the years I too have questioned that I was a good mom and they have all told me that I’m a great mom, which warms my heart when I question that maybe I could have done this or that better or differently. Thanks for writing this series ❤

I loved Hot wheels! I had a friend who had brothers and when I visited I would head straight for their race tracks. It was so much fun to watch the cars go ripping around the course.

It’s great that your children all feel that you’re a great mom and I bet your ability to let each of them be their own authentic self is a huge contributing factor in that. It’s a bit of a virtuous circle in that sense, I suppose.

Thank you for your kind words. They are amazing kids and it is a circle. Yes, Hot wheels were awesome! I’ve begun looking at toys again, and from a new perspective. As an adult who is reclaiming her right to play and experience joy, and as a Gamma to be (found out our oldest is pregnant on Thanksgiving). I received my official diagnosis yesterday, and now I’m sitting with how I’ll share this with our kids.

I’m sure I’m having more challenge with it then my kids will when I tell them, and they may even say duh mom, we are not surprised(not in a bad way, just, they knew before I did kind of thing). I do think about my kids wanting to have kids and the little one that is now growing in our daughters tummy. I want the best for them all.

I already know I am going to be an advocate. There are so many of us being diagnosed as adults and still so much more to know and share. From puberty, to pregnancy – motherhood, and menopause, just to scratch the tip of the iceberg.

Sometimes I felt like Audrey Hepburn’s character in Funny Face or in My Fair Lady or even Roman Holiday…having to conform to something she was not before embracing what she was with quirks and beauty…and finding all along that she was her own individual type of beautiful- outwardly and inwardly.
I have found this to be true. No longer do a beat myself up cognitively for the mistakes I made in the early years of my kids upbringing ( under 5- although I can’t watch videos without cringing at my obvious non awareness of my autism) but now I know and embrace it mostly which helps me realize when I live my own kind of individual beauty essence- I create it in my world. …and Aspergers diagnosis has been and is one of the most beautiful things about me. As with all things beauty comes with brutal factors…sharp edges, darkness enhancing the light…its all there..and I find when I accept that I can go about my life much easier…your blog was part of that and continues to support that when I feel too bogged down by the disheartening factors.
Every night I feel particularly guilty for my eldest’s upbringing ( she is now 11) and how I have to go through all her firsts and make them way harder then I do the two boys that follow…and each time I feel the guilt for the many mistakes ( and I also apologize to her directly at crucial moments) I tell myself “You did the best with what you knew.” and she tells me, “Mom I am tired of hearing it – you are the best mom and when you say you don’t deserve me back then…I hate it because I look back and see the best mom and Id rather you made mistakes and told me they were mistakes and try again then feel awful about it and not make the rest of life as happy.” Wise one that she is…:) My other aspie girl:)

I find grace to myself in all my individual ( and paradoxical traits) is the best way I can extend grace to the world. I am a paradox. Sometimes so”boyish” and yet so “girlish” and I am ok with that:) Thank you for setting an example of grace as well. The more we accept ourselves the more we can accept others…it doesn’t mean we wont struggle but it does mean when we struggle- we will rise again and find beauty.:)

This comment is so amazing. I love your take on beauty and grace and authenticity in who we are.

Being an undiagnosed parent is incredibly hard. I feel like I made so many mistakes and there were so many things I would have done differently if I’d known and yet it turned out mostly okay anyhow. Perhaps having our hearts in the right place makes up for a lot of technical/practical errors.

Your daughter sounds wise beyond her years. What a sweet, kind-hearted thing for her to say.

Reasons for the male bias in the diagnosis of autism include the focus primarily on boys in Asperger’s studies (as well as others) leading to diagnostic criteria that reflect the condition’s presentation in males. This bias is not restricted to autism: it is not uncommon in medicine to neglect gender-based variance in symptoms and response to different treatments. Perhaps it is not too surprising that the “extreme male brain” theory appears to fit when the diagnosis of autism is based on male-oriented characteristics?

As you might guess, I’ve got a particular interest in this subject because of my own experiences and I’m following this series avidly. Can’t wait for part 3!

There have been recent studies into a correlation between autism and gender variance: one from March this year found that the incidence among young autistic people was 8 times that in the general population (and among those with ADHD was 7 times higher). Although the study did not draw any conclusions about the cause, it was conjectured that social interaction difficulties result in considerably less pressure to conform with the behavior of peers, leaving those individuals more free to follow their own desires and interests.

I could go on at length, but I’m writing a comment rather than a blog post here! 😉 Maybe at some point I’ll tie together all my thoughts on this and write them down.

I would love to read your thoughts on this, Alex. Please do write something when you’re ready.

There have been recent studies into a correlation between autism and gender variance: one from March this year found that the incidence among young autistic people was 8 times that in the general population (and among those with ADHD was 7 times higher).

The inclusion of ADHD in there is really interesting to me. I’ve always sort of assumed that part of autistic people’s tendency toward being less likely to conform to a binary gender (gah, hope I worded that right) was in part due to being less tuned in to social cues/rules/mores/whatever. But ADHD . . . social difficulties of sort that are common in autistic people, is that part of ADHD? Now my brain is going in all sorts of directions.

People with ADHD also have some social difficulties, due to being more impulsive (or daydreaming) then it is “accepted” and the hardships the experience in the education system – that effects their self esteem and their behavior.
I have to say that from my point of view, ADD and ADHD are not as much as “disorders” but more of “people who don’t fit in the way it is acceptable to learn and concentrate”.

I am diagnosed with ADD and Autism, and hell, people just don’t get that not everybody thinks the same way.

That’s a great point – I hadn’t considered the impulsivity as something that could cause social difficulties but that makes perfect sense. Thank you for pointing it out.

And yes, the word disorder is a problem. It’s used so widely to refer to things in the DSM and has become a bone of contention for many people. Personally, I don’t give it a lot of weight but some people are very much opposed to it and with good reason.

“I am diagnosed with ADD and Autism, and hell, people just don’t get that not everybody thinks the same way”

Oh, so true!!! Instead of celebrating the unique way that we think and live in the world, it’s judged and condemned. I suspect that there are more people in the world that are unique and think differently then make themselves known. They too are trying to fit in to some defined “norm”.

I received my Autism diagnosis yesterday and tomorrow I go back to see my doctor for another appointment and a check in with questions, what’s next after having a day or so to begin to process the official diagnosis. I asked my husband who is off work today if he had any questions to ask so far for the appointment tomorrow and he rattled of a few things, what’s next, how do I share the news, etc., then he said, what are the milestones and I froze. I felt myself go into defensive mode. I said there are no “milestones”. That is not what this is.

I could feel myself bristling, feeling old feelings I’ve felt all my life of how I had to change or improve, be better, be measured. Urggghhhh!!! I am amazing as I am! We are amazing as we are! Sorry, that was a vent. 😉

“But ADHD . . . social difficulties of sort that are common in autistic people, is that part of ADHD?”

That’s a good question and I know for me, it was a fear that I had going through the diagnostic process that the doctor would tell me that what I was presenting with were ADHD traits and not Autism. It’s not that I wanted one and not the other, just that I wanted an answer and what I had learned about ADHD did not fit for me and I had been mis-diagnosed so many times, and in my heart, I KNEW – this was it.

Focus or not being able to focus is one area I have seen in ADHD as I understand it so far – my siblings had an ADD – HD diagnosis. The difference I am learning, at least for me, as I read, is that it seems that inability to focus (among other things), or stay on task as it is worded clinically, is not the same with Autism-Aspergers.

I know I can focus intently on an area of interest, and when I have difficulty focusing it seems to be often related to sensory overload, lights, sounds, activities around me, all at the same time.Those things can totally throw me off. The more I learn, the more I want to understand.

“Perhaps rather than extreme male brains, autistic women have extreme individual brains. As a group we seem to be less influenced than typical women by the roles society expects us to play.”

This resonates with me so much. I’ve received advice – stereotypes and generalizations – about the world that didn’t make sense to me, because I would always notice these exceptions to the rule. In the end, I just modeled myself after people close to me instead of after society at large. I’ve always felt like an outsider of society looking in; ultimately, I’m just an observer who participates when she feels like it!

I’ve received advice – stereotypes and generalizations – about the world that didn’t make sense to me, because I would always notice these exceptions to the rule.

Yes! The exceptions to the rules are impossible to ignore. I wonder if we are often hypersensitive to the exceptions because early on we try to navigate using black/white rules and are quickly confronted those rules breaking down in the face of one exception after another.

I agree! I think it’s also because we’re often some of the exceptions to the rule. I think we might know on some level that some of the social rules don’t quite apply to us, which makes life complicated!

It’s been so hard to send this – I’m scared , overwhelmed , heartbroken and quietly raging and alone. These ,along with confusion , despair and hopelessness and guilt, have been the dominant ’emotions of my 48 years. A recurrent dream is monstrous waves threatening to drown me – now ,awake, those same waves are not monsters – they are waves of realization, of clarity, and hope. They have huge actual and potential energy to catapult me and both my sons out of years of unhappiness. I feel a terrible urgency to stop my younger son (20) from drowning,from being beyond rescue,for it all being too late.My older son(23) I know somehow that he can hear me and is making his way out . Please understand that I have never written like this before in a public way.I see now that I am autistic and so are my sons. I stuggled so much to write the actual facts to support this- there are so many ,too many. Back to those ’emotions’ – Confusion,Gone; Despair,lurking on the periphary;Hopelessness, stopped in it’s tracks (for the moment) ; Guilt, not going anywhere -at the core of me ; Alone, This actually intensifying with the fear that although I can now see where I ‘fit’ i.e in the Autism Spectrum, others may reject me . I fear the damage done to my sons by my struggles may be irreparable and am utterly heartbroken for them. The ‘quiet rage’ is building , giving me courage and hope and huge energy I will need to help all three of us. Please understand that I have NEVER reached out to others before in this way . I see that my attempt to communicate here came out quite surreally. I will just have to post it as is, and hope for the best, given the urgency I feel. Thankyou

It gets better…what I found was the first year after diagnosis was the most confusing and grief filled but also happy…It was a roller coaster…What I really had to realize was that I was my best advocate…and that I HAD to be the change I wished to see in myself, others and the world…It helped to find as many blogs and books like this here to support me but outside of the screen I found I had to work hard to build my own supports…like sending posts that resonated to family to explain, reading them with my kids, reading books on long drives to people I wanted on my team, giving a copy of Aspergirls to my therapist, giving it to my best friend and husband to read…as well as Cynthias book Nerdy Shy and Socially Innappropriate…giving myself grace when I messed up…letting myself mourn but also celebrate all my differences…and cognitive therapy to learn boundaries, anxiety reduction, coping with sensory overload, and perspective taking…A LONG journey…7 years later and its amazing:) (Mostly- still hard days because the world is what it is) The most important thing is for you to be your own advocate!!!!:) Good luck

I’m glad you felt safe here and had the courage to share your experience. If it helps at all, your sons are very lucky to have a parent who shares their neurology because that gives you an innate understanding of how they experience the world.

I hope you’ll read the other comments by parents here if you haven’t . So many of us have felt like we’ve failed our children and yet, our children often see us in a very different light.

What Kmarie said below is so important – there’s a huge community online that understands and shares your experiences. There are blogs and facebook support groups (in particular for aspie/autistic moms) and discussion groups that you can join for support and help and information. There’s so much to process initially and having some kind of support/help makes a big difference. If it seems appropriate, you might also talk to your sons about your realizations. My daughter was their age when I first started to realize that I was on the spectrum, and talking with her about it was an eye opening experience.

Sharing your thoughts here is a huge step for you and I hope it will be the start of something positive and life changing. Just know that you aren’t alone and there is a whole community of people who are just like you and are ready to welcome you, exactly as you are, pain and difficulties and everything.

Thankyou so much for your reply , it is a great comfort to feel welcomed. I wish I could be more forthcoming in this reply, but I think I’m worn out just now. I really appreciate your words,thankyou so much :o)

It is not ‘only’ Kmarie and Cynthia who are glad that you are here with us. That you found the courage to speak up, hard as it is in the beginning. Maybe one of these days you are comfortable enough to go through all the comments on this post once again: So many of us questioned their role as parents and found relieve, met with understanding from our children once we could talk openly, equipped with the new knowledge. All the best wishes that it may be the same for you.

Thankyou Ernest. It is wonderful to find you all – even better to feel welcomed and know I am in the right place. The courage (couRAGE) has come from the rage :o) I’m spending most of my time at the moment reading blogs and comments,making notes and hoping that I can be skillful in how I share this new knowledge with the boys . I don’t want to be clumsy and tongue-tied with such an important conversation. Seeing that people here on this blog have done it, and they and their children have benefited from sharing , means a lot. Thankyou for your help and Best Wishes to you :o)

Elizabeth – I have no words of wisdom or experience, am only at an “I think I might be autistic” stage here myself. But I want to say you are definitely not alone! Brava for having the courage to post.

“giving me courage and hope and huge energy I will need to help all three of us.”

I’m so glad you found your way here. Bravo for moving with courage and hope. I too have had so many of these emotions. I’m gathering information too so that I can share my new diagnosis with my kids in a way that comes out as clear as possible, verses the “Rainman” stereotypes that are assumed for someone with Autism-Aspergers. I am heartened by the words and stories I read of others here who have shared with their kids, and the words and wisdom of their kids who say you are a great mom! I’ve heard this from my kids before so I know they feel that way. I still have sadness that unknowingly being Aspie was and is a part of who I am and they carry that possibility within them, and may be on the spectrum in some way, or pass it on to their kids when they have kids.

I’m reminding myself that being Aspie is so much more than the difficulties and challenges, and that in fact with knowledge there is empowerment and celebration possible. I wish you the same and a warm welcome ❤

“Perhaps rather than extreme male brains, autistic women have extreme individual brains. As a group we seem to be less influenced than typical women by the roles society expects us to play.”
Yes! Yes! Yes!
I feel just that way. I actually tried very hard to conform to norms (I actually tried to make myself like coffee during my military service in order to look more normal. I failed.) – But i just never succeed. The funny thing here, is that people actually thought that I am being non-conformist on purpose!
I find interest in many things. I believe I actually can find anything interesting, but the way and the depth of how I find it is different from the way most of the people around me find it. I love to collect lots of little details that build up a huge world hugging puzzle. Most people just look for the local story, not the tiny details or the huge puzzle,

Your blog-post resonate so much with the way I feel things.
You also give me a lot of hope that I will be decent parent. I want to have children, but I am afraid I will be terrible. Knowing being autistic and being good parent are not contradictions really helps. 🙂

I love to collect lots of little details that build up a huge world hugging puzzle. Most people just look for the local story, not the tiny details or the huge puzzle,

This is a great answer to the question of the difference between an autistic special interest and a run of the mill interest. 🙂

I think that knowing you’re autistic before becoming a parent is a huge advantage and one you can leverage if you choose to. Many of us managed to do a good job without knowing, but that amounts to parenting with one hand tied behind your back. But either way, good autistic parenting is totally possible and apparently happens all the time.

“I love to collect lots of little details that build up a huge world hugging puzzle.”

Oh, I love that!!! That’s me too! I had “friends” in the past who would tease me about how I could share knowledge or information on just about any subject they could bring up, or I could find it (a gift for finding information) in a matter of minutes. It’s not because I was trying to impress or be some kind of walking encyclopedia, I just loved-love finding out details. I am all about the details.

Meanwhile, at the age of 42 I’m rediscovering my love of Lego, and kids’ books (Nancy Drew, Hardy Boys etc. – having to resist the temptation not to splurge big style on the whole box set of each – though the real reason for not buying yet is the lack of shelf space!!), and all the things that I loved and felt comfortable with when I was younger. My escape mechanisms. They’re not remotely age appropriate (or gender appropriate probably) but I think I’ve reached that point in my life when I’m comfortable with being me. That’s why my Aspieness has come out so strongly (strongly as in me realising what it is), and maybe I now realise too that I need better coping mechanisms and these things help with that.

I loved Nancy Drew and Hardy Boys books and could actually see myself picking them up again as an adult in a comforting sort of way. In fact, I just might – given my reading difficulties they might hit the spot. 🙂

I really want to write something about “age appropriateness” and how that affects autistic adults because I’ve heard it come up quite a lot in ways that evoke shame and a need to hide things we like.

What I love about kids’ books is that the endings tend to be happier, good almost always overcomes bad, and the plots are more obvious – like they’re signposted. I can see what’s coming and that makes me feel better (I don’t like surprises so I prefer books & films the second time around). And the characters tend to fall into particular categories so they’re easier to read (no pun intended). Don’t get me wrong, I love adult crime fiction (especially the ones set in earlier times (Dorothy Sayers, Agatha Christie, Georgette Heyer) but they’re more of a challenge, something to get the brain working. Childrens’ books are more relaxing. And I’m a big Enid Blyton fan!

I was mostly just thinking it would be nice to read something aimed at 10-year-olds because everything in The New Yorker makes my brain swim lately. 😀 But yes, there is something comforting about happy endings and good winning out over evil. In general, I’ve always gravitated toward dark crime/mystery novels or sappy romance crime/mystery novels but they start to get repetitive after a while.

Yes, please do! I’ve judged myself so many times for age appropriate things. Often when no one else said anything, but I knew there was a social “standard”. I’d feel shame and shut down. Choosing to let that go!

“Meanwhile, at the age of 42 I’m rediscovering my love of Lego, and kids’ books (Nancy Drew, Hardy Boys etc. – having to resist the temptation not to splurge big style on the whole box set of each – though the real reason for not buying yet is the lack of shelf space!!)”

Yes, Yes, and Yes! I bought myself blocks right after I left my doctors office with my diagnosis. My husband said your buying blocks with his quizzical face and I said yes and kept walking.

I loved those books too! I had almost all of the Nancy Drew’ss as a child, as well as Trixie Beldon, and quite a few Hardy Boys. Oh, and Cherry Ames. I left them behind when I left home and they were damaged by my siblings and I don’t have them anymore. They were very much comforting, as well as educational because there were quite a few facts built into the stories.

My mom was reading them, among other mystery stories and that was how I came to read them. The Cherry Ames books were given to me by an adult women friend of the family and I loved them. I’ve seen the originals at antique shops and they want a pretty penny for them.

Our daughters grew up reading their own copies, and our son read a lot of the Goosebumps books. When the Nancy Drew computer games came out our oldest daughter bought them for our youngest daughter as a gift and both have played them through the years.

As far as gender appropriate, it’s a good point. These days I’m questioning what that really means. It was not until the turn of the century that color (pink or blue) was assigned, and before that, there was a time when pink was assigned to boys and blue to girls. Gender or role assignment seems such a melting pot, and may be based on stereotypes, just as how acting a certain way, or having a specific response is expected in “society”. I don’t fit in that societal “Norm” either as an Aspie. Why should I fit in the gender one either. If I don’t have the physical build to be an iron worker, or the interest I won’t, and neither should a person with a dancers heart, not dance, tap – ballet, or otherwise, just because they don’t fit a norm. for a dancers body or gender.

I also wish I had known something about all of this stuff earlier, though my kids are still quite young – 2 and 4 (both boys). I have worked hard to disengage myself from the controlling, authoritarian parenting style that I experienced as a child, but even after I felt I had done a lot to extricate myself from all of that, something was still causing me to fly off the handle way too often for my own liking: I am beginning to understand that it has to do with my sensory issues and how difficult it is, at times, to parent when that well of sensory fortitude (for lack of a better word) is running dry. I’m still figuring out how to manage it but at least I am more aware of the nature of the challenge.

I also was “late” to give up some of the childish, boyish fun of my youth. I loved playing in forts in the woods and I mourned the year that I somehow realized that was no longer an acceptable activity for a girl of my age – maybe 10? Most of my other interests lay more within the acceptable realm of girlhood/womanly activities, like drawing, reading, and writing. I do think that my interests were/are both typical and atypical for girls.

Despite not being particularly girly, I was worried about having boy children because I thought I wouldn’t be able to relate to their interests in things like sports, which I now see as silly because it’s just more gender stereotyping. So far they are interested in a variety of things (of course), from cars to cartoons to drawing to action figures to books. I don’t have to do their hair, haha. Though my little one is very into wearing costumes and accessories! 🙂

I had a hard time giving up “childish” activities too, particularly tree climbing and playing with certain types of toys. Oh, and baseball cards. I got yelled at for that by one of the nuns in 6th grade.

It’s great that your children have varied interests and you encourage that. My daughter always favored girlier things but recently she’s discovered that she enjoys fishing with her dad and she says one of the reasons she likes it is because it’s considered a “man” hobby. 🙂

Thank you for sharing. I relate to this in so many ways–as a parent on the spectrum raising a child in the spectrum, as a woman diagnosed in her adulthood, as someone with a brain that seems extremely individual too.

… There are many over-lapping themes in the replys here – from clothing and girly-girl, to what we played with as kids, to how we functioned, or mal-functioned as it were, as mothers with diagnosed, or more frequently undiagnosed Asperger’s, which by the way, please remember was not really on the radar as a specific thing until after I became a mom, and really has only been studied indepth to the degree it has in the last decade …
Oddly enough, I had no games or common toys as a child which is likely why I can draw and paint since my parents kept me in colouring books, paper, crayons & markers.
From about ages 10-12 I filled several notebookes with floor plans for houses. It was like an addiction, and I still have 4 floor plans logged in my head which I frequently revisit with these many years of construction experience, imagining every aspect and corner of the structure from its plumbing to electrical runs, foundation and framing, finish materials and so forth. And also can see the detailed ‘blue prints’ and pictures of each finished house which I will someday commit to paper …
Meanwhile, I’d like to reinforce my previous reply by adding this thought … which I somehow feel may describe others;
I tend to not notice gender in people, or colour, or other things that seem to be the way neurotypicals might describe a person … I would either be a terrible crime-scene witness, or an extremely useful one, as I may forgo a question about gender or race in order to describe in detail the colour and texture of interesting hair, or the detailed pattern of an article of clothing, or even the interesting bone structure of a hand or a nose or a jaw.
Or even certain noises that might linger in my mind that were present.

I find in most cases, my detailed analysis of anything is not conducive to any real depth of verbal exchange with most people. I feel I am always having to … dumb-down, or completely eradicate most of what I would like to say EXCEPT in the cases of a number of men, and one particular woman I can think of …
And, by the way, I surely do not mean to sound elitist or superior in anyway. If you ever talked to me in person you might be apt to regard me as a dumb hillbilly! It’s just that, the vast majority of people I come in contact with or either not intellectually minded, or too busy to enjoy an intellectual swim of any depth.
… I think this same situation is likely common among male & females with Asperger’s … I do seem to find in just the little reading I’ve been able to do, that women with Asperger’s, ie; ‘female aspies’ are, on average much more logical and reasonable than neurotypical females. This would be the obvious reason we get on so much better with males.
I have not grown comfortable with the term ‘aspie’ at all since I associate it entirely with asps.

Nah, I don’t find that an elitist comment at all! I’ve always seen it as simply a difference of intense interests. For example, I’m an animal nut surrounded by football junkies. Their lack of interest in the swivel-hook-things on a colossal squid’s tentacles make them no less intelligent than my lack of interest in who the lead linebacker is for any given team. I’m also from the sticks. Deep in the sticks. Yay for hillbillies! =)

I really enjoyed how each reader took something slightly different away from this and related it to their own life. It’s like we all knew/know that we’re different, but how we perceive that difference has so many nuances and variations.

I fully second this notion. Thank you, Cynthia, for all you are doing for us. Not least that you are so tireless in answering our comments, It makes this such a unique and welcoming place in the whole ASD blogosphere.

Your comment was interesting bc you said You’ve always seen it as a ‘difference of intense interests’ …
(by ‘it’ I assume you were refering to my comments about communication with males vs females)
but I am also interested in the difficulty of communicating with people who think neurotypically, which is the vast majority of human beings.
I see it as ‘an intense difference of interest’ in the very basic definition of communication .. . what I mean to say is, I can find something interesting in just about any subject, even if the interest is pure learning – what I can never seem to do is engage anyone in exploring things to any depth of interest.
I can’t tell you how many times most of the people in my world just say ‘that’s too much for me to think about!’ which feels like an intellectually-lazy cop-out and is very disappiointing, though I expect it so I do not show dissapointment. This is not to say I analyze or try to intellectualize every little thing I discuss with someone … it’s just that … it seems like no one else is as interested in learning more about an interesting topic we might be discussing …
I do not wish to appear as if I’m a know-it-all – but I do easily assimilate info and retain it – but I enjoy feedback too – I can be the last word on very few subjects. I like to hear new takes on things.
BUT since I’ve been learning about Asperger’s and discovering myself, it’s opened up a lot of new things to think about and study – this gender topic being one interesting thing.
I realized just now, that I came at the gender topic from the concept of communication only.
I am so androgenous in my thinking, and have been for so long, clothes and toys, make up … these things seem irrelevant somehow. Though I must be forced to admit, these things are meaningful to some people and I do not wish to condemn anyone in any way for their interests.

The communication barriers I am most familiar with usually occur with women. I’m sure the vast majority of them are neurotypical in their thinking, and therefore communicate neurotypically – which is in that vague, non-specific way that requires an unusual & frustrating amount of energy to get to the pertinent facts.
During such mining expeditions, I’m always thinking of that famous line
from Dragnet … ‘Just the facts, mam.’

The other point I failed to make clear is; the majority of males, neurotypical, are still much more logical and given to point-based conversation. (though in the past I have been stunned a few times by a male or two – I stood there and thought – ‘This man comminicates like a woman – how strange!’
I’m currently logging in my mind particular people I know whom I suspect might be ‘on the spectrum’…

This is another phrase that I am not sure of either. I think of colours, colour charts and rainbows when I hear the word ‘spectrum’. And I took that test which produces a rainbow of colours in a circle. It shows one side neurotypical traits the other side Asperger traits.
If any human being takes this test they will at least be on that spectrum – but do not have Asoerger’s if all their lines chart on.the NT side … is that correct?

Naturally, as I am apt to do, I’ve gone into several points here and may feel lucky to have one addressed.
Meanwhile, there is a LOT to learn about the way I think and what I will have to figure out in order to be an effective communicator with other human beings, male or female …

If any human being takes this test they will at least be on that spectrum – but do not have Asoerger’s if all their lines chart on.the NT side … is that correct?

Oh, oh, I just wrote up a new Take a Test Tuesday about that quiz and explained about the “everyone is on the spectrum” concept in the context of how the quiz is scored. After reading the research paper about the quiz, it finally clicked why the results include both an NT and Aspie score – they are overlapping but different spectra of traits.

Erm, yes, sorry. My comment was more geared toward seeming intellectual difference. My own communication isn’t so good at times.

There’s quite a few articles and quizzes about how one half of the brain is math and logic while the other half is artsy and abstract. Supposedly men are more the math side and women are more the artsy side. I kind of wonder if autistic people are prone to the math half?

I also think of rainbows and colors when I hear “spectrum”. Specifically, I see the Pink Floyd prism every time I hear it.

I’m on the spectrum but I haven’t got a math bone in my body. My special interests run along the lines of ballet, jewellery, and writing. My communication style is quite direct and I can be very naive but I am generally a logical “fix the problem” sort. But I am still very creative and artsy vs math.

… also, bc I am late to work, AND typing from an iphone, there are a great number of typos and mispelled words in my previous post which are unforgivable to me. I strive to avoid lack of clarity … and then – well, there you are … I’m paragraphs-deep in errors.
I apologize.
ugg.
Also frustrating bc this very post will take-away from the much more important thoughts I initially posted …

I shudder to think how many typos I’m making now that I’ve mostly stopped proofreading my comments here. I’ve decided to think of the comment section more as a conversation – less formal, more free flowing, less need to worry about making everything perfect, etc. Still, I know how frustrating it is to look back after the fact and see errors.

ok … I clearly need to revisit that test…
my black line wiggled all around the entire Aspergers side … I told a particular friend of mine to take the test for it would surely prove him entirely NT … lol

Many years ago, when I … well – I still do my own personal ‘surveys’ –
but back then, I paid attention to certain things people said – I was also going thru an abusive relationship with an addict so I was reading books about domestic abuse and co-dependency and drawing from my own battle with alchohol – ANYWAY –
I put a lot of facts together and learned a lot in my mid twentys … and I was expounding on all of this to a friend who was the director of a mental health facility. She listened to me for sometime then she finally said…
‘ You know just enough psycology to be dangerous!’
lol
This comment has always stuck with me … I’m either going to have to press on and learn MUCH more or get away from exploring the human mind and all the dynamics of interacting with others.
I now wonder how having this understanding of myself with Aspergers would have affected how I reacted in many of those situations …

I once took this long psycology test where it asks about 300 muliple-choice Qs. There were series of subjects mixed throughout.. within each subject, the exact same questioned would be rephrased a completely different way each of several times it was asked. After nearly 3 hours I had not completed the test because I kept going back thru the booklet to read all the variations of the Qs – The lady came back into the office area and I pointed out to her- how much time the could save if they just whittled it down to one question per subject. I was only 19 then. I realized I was quite sane and the alleged educated person may have driven me crazy had I allowed it.
I am for natural remedies and forgo meds and very rarely have a headache or any ailment.

Reblogged this on TRANS RESEARCH and commented:
“Perhaps rather than extreme male brains, autistic women have extreme individual brains. As a group we seem to be less influenced than typical women by the roles society expects us to play.”

Part 2 of the 3 part series by a woman with Aspergers.

A moving account of being a mother with autism as well as a discussion as growing up as a girl with autism.

“Ariane spoke about in her original post in this (which has been at the back of my mind for weeks) was how she assumed that her daughter’s speech was delayed and so didn’t seek out any other means of helping her communicate. . .”

“Side-thought: a lot of material that aims to help autistic/aspie kids with developing skills seems to assume that the parents and other caregivers are by default socially competent, perfectly capable of reading social situations, naturally “in the know” about social rules . . .”

I did not see a way to make a comment directly to this post between Anna and Musings of an Aspie so I’m sharing here.

A couple of things that speak to me personally with regard to what I read.

The first, I am the oldest of six and I can see in hindsight that more than one of us is likely on the spectrum. My youngest brother and second oldest brother were-are both developmentally delayed, and if the wherewithal had been present in the 60’s and 70’s to fully test for Autism and recognize it, they might have been diagnosed with Autism or on the spectrum.

My youngest brother was in the process of being tested knowing something was wrong, but not what. It was only later after he had died (accidental drowning) that questions came up that his delay’s might have been impacted by having hearing difficulties. I’m not sure that it occurred to anyone that he might have hearing loss that added to his other difficulties, not speaking etc.. The whole picture was not there, or not realized so I can totally see why an assumption was made about what was, or was not going on related to testing or diagnosis.

The second thing that came to mind as I read this series of posts was related to what Anna said in her side thought. The assumption that Autistic or Aspie parents would be socially and otherwise competent caregivers. My parents were not. They did the best they knew how, yet they were dealing with their own challenges. PTSD from serving in the Korean War, elementary school education (my father) and what I can see now as Autism – Aspie traits in my mother – and perhaps my father too.

Having my own children now (all grown) this subject came up today as my husband and I talked with my therapist about how we will share with our children my diagnosis. I, as an Aspie mom, that did not realize I was an Aspie raising our kids, did not see that my old children were having challenges with some of the very same things I was struggling with. In fact I did not even realize I was struggling in some ways. I thought it was just me that was somehow off, or, never saw that they were having challenges or struggling because they were having the same challenges I had, so I never saw it.

When I talked with my therapist about it today, I likened it to being colorblind or not colorblind. If I am colorblind I can not fully see shades of red, green, or blue. If I did not know I was colorblind I would see this as ‘normal’. So I would miss that there might be a problem in my own children’s vision and that they too were colorblind. He agreed, how could you recognize it.

My parents were not fully aware what was going on with us because they had their own challenges, and I as an Aspie mom did not see some of the challenges our own children had until they were adults and they talked about their own experiences.

My parents were not adept at social rules as defined by society. Then there is the idea of what society and what social rules are we talking about. Some societies don’t encourage eye contact for example.

The more I learn, the more I learn, and the more I feel peace and understanding with myself, and with my parents, even amazement at having six children and doing as well as they did.

Your comments right at the end have sent my brain off at a tangent and now I’m wondering if the reason my mother is so bothered about ‘what people think’ all the time is actually connected to her trying too hard to fit in and pretend to be ‘normal’? And maybe it’s not after all that she’s not bothered about our feelings but it’s so ingrained within her that she’s automatically defaulting to ‘what do I think society expects here’ (and frequently taking it too far)? That’s (indirectly) given me something (else!) to think about and might make it easier for me to cope with how she behaves sometimes 🙂

I can say for me that I have found a calmer place in my heart with regards to my mom. The more I see of my own traits that are Aspie, the more I am able to see her own versions of these traits. My heart has softened towards her.

In my early 20’s all I could do was blame and rage about the abuse growing up in our home, physical and sexual and what I thought I was dealing with as result of the abuse.

It turns out I can see now that while there was abuse, dysfunction, and pain, it was tangled and woven in to the other challenges going on. There were layers to the labyrinth that I was dealing with as an undiagnosed Aspie. The abuse was a smaller part of the bigger picture.

My mother was raising undiagnosed children on the spectrum, children with epilepsy, ADD – HD – and very, very likely, she herself with more than a passing experience of Autism.

She was born in 1938, the oldest of eight or so and all of her siblings had challenges, some spent time in what were then called “state schools” for children that could not be raised at home (or so parents were often told in those days). She was also abused by her father and that likewise complicated any kind of undiagnosed spectrum issues going on for her and her siblings. We’re talking 1940’s and 50’s. There was little if anything and abuse was swept under the rug, pets had more rights than women or children.

Bringing it forward to her own experiences as a mother, abuse aside, she did really try, with the skills she had, to make it through. Do I wish it would have been better, most certainly but the coulda, woulda, shoulda is not what was, or what was available to her.

I really don’t think she had a frame of reference for what was ‘normal’ outside of what she grew up with, and her married life and life as a parent, which was isolated at best, with six children born between 1961 and 1972 – two of which had noticeable developmental delays, one severely so, and a husband (my father) who had shell shock (called PTSD now) who was in the VA Hospital as an inpatient, more than he was at home, so she was parenting alone, or parenting when he was home and he was drinking, or raging, or demanding care himself.

She herself did not even understand about how important bathing was until my sister took her in to live with her after our dad died. Bathing is one of those things on the spectrum checklist and my mom did not bathe often, and I don’t think she had any clue that was a thing, nor did she teach it to us as her children. I was teased and bullied at school for not bathing or washing my hair. I’d wear the same underwear for three or four days before changing, up through my early 20’s. Getting out into the world, as has been mentioned, is what made me aware that bathing, often, changing my clothes etc.. were part of what is expected and the norm in our society. I have grown tremendously since those early days as a 20 something.

I am just realizing as I put together my own story quilt that there were some things that she clearly just did not have the skills for, or the wherewithall to learn. It does not excuse the things that she could have changed, but I can see there were more things that she was not aware of, or did because that is what she knew to do, rather than deliberate negligence.

She defaulted to her own upbringing in an abusive home, and the amount of dysfunction and developmental delays that were all around her in her siblings, and that I think she herself was also living first hand. She lost her mom to cancer when she was 13 and I’m sure that added to the challenges.

Where my mother knew differently, she tried to be and do differently. It’s only now that I can begin to really see that.

There were times when what she did in her efforts to be a good mother were off the mark for sure. When I was a teenager and wanted to know more about sex, instead of answering my questions, she bought me Masters and Johnson’s book on sex. I was 13 or 14 at the time. That was clearly not appropriate, but that was how she knew to respond to my needs.

Thus my comment above, it’s amazing she did as well as she did with six children.

Oh, I could not agree more. I’ll be 54 in January and it has for sure been a learning curve and I’m sure I’ll continue to wind my way along. Knowing I’m an Aspie does help so much with this process. Here’s to ease and peace in your own process too 🙂

I think the thread is limited to a certain number of replies on each comment and then the reply link disappears.

It makes a lot of sense that we have more trouble recognizing something as different or a problem in others when that thing is so close to our own experience. I’ve had a few people say that they didn’t realize how different they were from most people until they moved away from home for the first time (usually to college or the military) and were immersed in the lives of strangers. It was only then that they had a large number of comparison examples of how people behave in home-like settings (as opposed to typical social interactions outside the home, I guess) to compare to their own family life.

I guess we each do the best we can as parents and our parents did the same. Hopefully with more awareness/information out there and better diagnosis, more people will become aware sooner that they’re on the spectrum and will be able to put that knowledge to good use.

nelliepmoore … someone shared an opinion that I was brave in my comments … but I think most would agree, it took an awesome amount of courage to share the abuse and things you shared.
I was not raised in abuse at all, but have heard many stories, and began reading many books about the subject, and met several people who shared stories about domestic & sexual abuse. In no book I ever read (many), in no co-dependent class I sat in, & no life-story I’ve ever heard – was the word ‘Aspergers’ ever used.
But I did learn to be emphathetic, sympathetic, and to have compassion for these often horrendous things.
With just the overwhelming info I’ve learned in the last 9 -11 months about Asperger’s, which I am still assimilating that is still extremely overwhelming at times, my heart really goes out to you for the extreme hurdles of your journey, AND your additional self-discoveries, which have not caused you to digress into despair, but seem to have made you a much stronger, wiser woman.
Your story is like a beacon of hope to many. It is like a light to help others walk thru a dark place.

Awww, Signlady you are very kind. Thank you. My heart reaches out to yours as well. There is strength and healing in our numbers.

I think each one of us here, and all of the diagnosed and undiagnosed Aspie’s are all brave and strong people. There are so many ways that Autism and Aspergers shows up in people’s lives. The more I learn the more I want to stand on a rooftop and shout for all who have ears to really hear that there is hope. We are not broken, misfits, worth less, throwaways, retards (hate that word).

In all of the ways that we are, we are amazing!

For those of us that can, and feel moved to, we can each be a voice for awareness. It might show up as a painting, or a drawing. It might show up as a song. It might show up as we do that special thing that we love. It might show up through some amazing books that are being written during this time. It might show up in ways like it is here on this blog. One voice at a time, asking for help, asking a question, sharing some insight or personal experience that helps another person on the path. These are all beacons of light in a sea of lights.

I love that you used the term and image beacon. Many moons ago my AOL email handle used to be NMBeacon. I was born on the East Coast of New England and loved the ocean then and still do now, even though I am now living in the middle of the country with nary an ocean in sight.

I used Beacon as my handle because I have always loved lighthouses. Always felt a special draw to them for their ability to stand firm while the sea crashed on the rocks around them. I loved how they sang their song to the boats and ships in the distance to guide them, as well as warn them of the cliffs and rocky shoals.

Here’s to all of us being whatever that guiding light looks like in our own lives. with ease and peace. ❤

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

Related

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

Related

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.